Severe Tortuous & Redundant Colon

Thank you. This has been a lengthy and painful journey that as I have gotten older has gotten worse, which is typical in most things. I hope you can continue to find relief, as it effects so many parts of your life.

Disclaimer: This is only my experience. I choose going natural. I have used organic, integrative, functional, holistic Naturopathic doctor's advice along with my MD’s since the early 1980's. Personally at 71, I can't imagine an operation. After numerous months of trial I found a system that works well.
Good luck. I have tried laxatives and they are not consistent and have side effects like bloating, etc. And all say for occasional use. They disrupt and make the system unbalanced if taken continuously. I liked a response from a co-redundant colon person: “It’s physical” so regular constipation suggestions may not work.
Last Dec the doc had me do a non sedated colonoscopy. He could get through the colon as I watched on TV. I had had a baby years ago (natural and could stand pain) so figured I could stand it – it was no big deal. Most people in world don't get put out. Very interesting and it helped allow the scope to get through because I relaxed. Look up Osmotic gradients (MMC which is the electroactivity in the GI tract during meals and fasting) and Migrating motor complex. If too much water is pulled into the colon, diarrhea results. If not enough water is pulled into the colon constipation results. We gotta balance the moisture in our long pipes! Balance of minerals and your electrolyte is important.
OptiMag and K2+ Potassium are great supps and be sure to include prunes, squash, sweet potatoes, rhubarb etc in your diet. I like to soak ground 2T chia and 2 T flax seeds in prune juice overnight, then take half in the next morning and half that night. Throw sugar out, processed and refined foods and drink lot of water starting with a quart of hot water in the morning - boys scouts. Standard American Diet is not helpful. Coffee and Smooth Move are my back ups. I don't like coffee but it usually works if my regularity is less than optimal. Thankfully I seldom need coffee. Calcium carbonate seems to be the most constipating. I depend on blood work from time to time to make sure my minerals are balanced. Good luck, @farmersmith

Thank you! At this point, I am willing to try anything to get some sort relief, or "normal" life.

Good luck and yes our bodies want a natural diet that works for us. It was my Naturopath who challenged me to find what worked specifically for me. Maybe a good place to start is to check out more how our bodies work with osmotic gradient and migrating motor complex. Then find a Naturopathic doctor who can help with integrative health care? I did do PT for proper toilet seating which was helpful to breathe right + considered if I had SIBO and once I learned more, it took me over four months to get it to the great regularity I have now. Also all my life I had issues with constipation. Now I see in my youth I ate heaps of roughage like rhubarb and plums along with winter squash and sweet potatoes and yams. Good luck finding your formula. Don't give up and stay physically active. You can be regular. Natural has been right for me, what a relief. Talk about ample too! @farmersmith

At 70 I have had an undiagnosed hiatal hernia that is now becoming giant in size. I developed Iron Deficiency anemia and my PCP dismissed my symptoms if I might be anemic. I was experiencing difficulty with my breathing and he prescribed prednisone to treat my asthma which is in my problem list. I didn’t get any improvement from the 2 courses of prednisone and nothing further was done until I presented myself with fatigue and the chills (They’re so focused on Covid) and a chest X-ray on 2/7/24 confirmed a hiatal hernia. I continued to see a cardiologist and my echocardiogram was good and compared to my baseline in May of 2020. Finally when I see the pulmonologist on 2/28/24 she orders a CBC and my hemoglobin was 9.7. Dips down to 8.9 on 3/20/24 which was the date of my first iron infusion. Saw the gastroenterologist on 4/2/24 and wanted to expedite the endoscopy and colonoscopy so a different provider did both procedures. The endoscopy was “technically difficult and complex due to the abnormal anatomy of the upper GI. I was diagnosed with “a somewhat torturous sigmoid colon” in September of 2009 from a CT scan with contrast. I awakened from the anesthesia and tried to hold back from moaning because it hurt so bad. I was very nauseous and dry heaving. The hiatal hernia caused a GI bleed and thus the anemia over time. The stool sample confirmed blood in the stool. I’m feeling very uncomfortable and symptoms that I had experienced during the middle of the night with wretched vomiting weren’t taken into consideration during my routine colonoscopy 5/17/22. I’ve been living with so much abdominal pain compounded by all that I know about my GI tract. Waiting for a surgeon to take me seriously and that’s been an awful experience just going to one. Many of the specialists/providers don’t know how to connect the dots. And now that I have confirmation of GI bleed I’m not going to move forward with the video capsule endoscopy. When is enough diagnostic testing enough ? I desperately need surgery for the GIANT hiatal hernia and the 3 iron infusions corrected the anemia but the GI bleed still is going on

Hello @mrd and welcome to Mayo Connect. I can understand your concern about taking care of these difficult health issues. You have already done a lot of waiting for a diagnosis and treatment and I'm sure more waiting is difficult to consider.

Please know that surgery is considered a last resort for most medical issues, especially if you have pre-existing conditions that might make surgery riskier. For now, you might consider moving along with the diagnostic tests that have been recommended.

Please know, however, that it is always your right to seek a second opinion. If you have not sought a second opinion, I recommend that you go to a medical facility that is multi-disciplinary such as Mayo Clinic (here is a link to appointment information: http://mayocl.in/1mtmR63) or a university medical school in your area. Medical facilities like these are best able to sort out hard-to-diagnose issues.

Have you considered a second opinion?

One surgeon indicated that my hemoglobin level is WNL with a GI bleed and I’m asymptomatic… but the wretched vomiting that I experienced was dismissed. The hiatal hernia is VERY uncomfortable now. And the belching I’ve experienced is difficult at times even with omeprozole bid. I’m being monitored also by a hematologist and I’d have to continue with iron infusions if needed. The many years of dealing with constipation contributed to the hernia. It’s pressing on my lungs and I’m asthmatic and wheezing and SOB occurs. The whole mess has robbed me of my quality of life. The 2nd surgeon didn’t see that ulcers were noted on the endoscopy and dismissed that the procedure was technically complex and difficult due to the abnormal anatomy of my upper GI. Hershey Medical Center is a 1/2 hour away and I’m in the Penn State Health System. Even went with a new PCP because the undiagnosed anemia began in early Fall of 2023. The pulmonologist I saw on 2/28/24 saved my life

@mrd, I suppose you've tried lifestyle changes to deal with some of the symptoms. I'm thinking of eating less fatty food and keeping the head of your bed elevated at night? Also, in order to be more comfortable, exercise might be a good idea in order to deal with any excess weight that might be contributing to the hernia discomfort.

Here is a link to a discussion on Connect about hiatal hernia, as you read the posts perhaps you will find suggestions that might help you deal with at least one of your many symptoms:
https://connect.mayoclinic.org/discussion/hiatal-hernia/

As you read the posts in this discussion, feel free to hit "Reply" and ask any questions that might be helpful. Since you are dealing with many different problems, it might be good to tackle one at a time.

Will you post again with an update?

I'm reading a lot of good info on this site. I had a failed colooscopy, 2 failed barium enema procedures, severe rectal bleeding, failed rectal endoscopy, repeated endoscopy with mini-equipment and was then found to have tortuous colon (duh!). A prescribed high fiber diet resulted in more misery, 15 or more BM's a day. Carried a bedpan in the car which I used frequently. Had emergency surgery for intestinal volulous and blockage. Prescribed liquid diet gave me burning acidic diarrhea. I previously had aggressive radiation for a vaginal cancer and my rectum was burned and the muscles are impaired, some overly strong, some very weak. Low fiber diet seems helps to minimaze BM's but get a lot of pressure/discomfort. Doctors say there is nothing they can do because of massive internal scar tissue/adhesions. Online diets are conflicted. I need help!!!!!

OMG!!! Have you sued your doctors yet?!! I am so sorry about your cancer and the treatment. You mentioned your muscle changes. I have been learning how they affect our BM's. I have smooth muscle weakness, almost no intestinal muscle movement. Mine is @ least somewhat caused from my HPTH and elevated calcium levels, for 5-7 yrs. My parathyroid glands are whacko, pushing calcium into my body when I don't need it. So, I have to have 3 1/2 of my parathyroid glands removed. No doctor ever mentioned anything about this to me and I should have been monitored for this since my celiac diagnosis. I have had CIC for 17 years. Small bowel partial blockages, 3 blockages in anus that required "digital removal ", with my finger. Been on every drug. My GI was terrific for my endoscopy that shocked me with a Celiac Disease diagnosis, I was and am asymptomatic. But when his narcissistic arrogant way of treatment was not working, he literally quit taking my calls/emails. For me, I eat a very very bland diet with little solid foods, drink meal replacement shakes (my daughter has issues too, she did all the research, so I trust the shakes). I use 3-6 capfuls of miralax to keep my 💩 runny mush-diarrhea. I was using Metamucil fiber daily, but it just makes me stopped up. I use it now, only 1-3x week, with extra miralax. I understand the pressure pain, it's terrible. It ranks up there with childbirth. Mine is usually air pressure, different than gas. I run to the toilet thinking it's 💩💩‼️, but there's a horrendous explosion of air, maybe some poop specks. I have had X-rays standing and laying of my colon every few months for 10+ yrs, my colon always (except 1x) has a moderate to heavy fecal load. I hope my story might be of some help to you. For the burning part I immediately sit on a heating pad or get in a hot bath with little water. I have also gotten over my anxiety about putting LOTS of Vaseline or hemorrhoid cream , with glove on, up my bum.